[Anonymous June 21, 1998 at 3:46 am Post count: 93172]

#1050535

Thanks for your posting Debby, you’ve answered some of my (unasked) questions, too!

Kim

[Anonymous June 24, 1998 at 2:56 pm Post count: 93172]

#1149509

Trying to locate some help in finding a Physician referral for problems
with Graves eye disease. Have been having a problem with rapidly
detiorating eye sight (one eye only) and comments from my hightly
respected Opthamologist/Surgon is that it is caused by aging – not
the Graves, although Graves eye disease and loss of vision coming on at
same time? His only suggestion is for eye surgery for lids to help
eliminate bulging eye look.I live between Chicago, IL and Milwaukee, WI
Any suggestions on where I can go for an referral system that is not
paid advertisement by some of the physicians – or one that doesn’t
charge a large fee for the referral info. Thanks

[Anonymous June 24, 1998 at 4:53 pm Post count: 93172]

#1149510

Hi Dee, Welcome to the BB. Sorry I can’t help you find a Opthalmologist well versed in Graves Eye Disease because I live in Canada. I am extremely lucky as my Ophthalmologist/surgeon is world renowned and he heads a Thyroid Eye Clinic about 15 minutes from my home.

I had eyelid surgery from him 10 years ago when I had a slight case of Thyroid Eye Disease. I was told it was for cosmetic reasons and it worked well for that reason. I had no trouble with my vision back then. This time around since my vision was becoming worse one of the first things I had was a CAT scan where they can tell if the optic nerve is in danger. My Ophthal likes to use the order of trying high doses of steroids by intravenous (works on some – not on me), then if necessary orbital irradiation (which should help to slow down and eventually stop the swelling), six months after that orbital decompression (an operation which is commonly used to allow the eye to settle back in cases of protrusion but a special variation of this procedure is used to try to prevent blindness in some UNUSUALLY Severe cases).

Dee, I sure hope you can find a good doctor to examine you. If you have symptoms of Graves Eye Disease, and when you say you have bulging eyes, you do, it is very important to start treatment early and be under the ongoing observation of a doctor who understands the stages of this disease. There are many many tests that can show if the vision loss you are experiencing is from Graves eye disease or just general loss of vision as we get older. I used to get upset at the amount of time I went through testing every time I went (this was done by doctors training under my doctor) until I was explained that the slightest change in some of these tests could make a difference to my treatment.

Good luck in finding a doctor and remember these are YOUR eyes you are finding out about and we only have one set.

Take care. SAS

[Anonymous June 25, 1998 at 4:51 pm Post count: 93172]

#1149511

Thanks to all that responded to my request for help in finding a DR
to help with my vision. Am starting the rounds today to get the
apmts set up. With all of the discomfort of Graves Disease, the
scariest is the loss of sight. Thanks again for the help.

[Anonymous June 29, 1998 at 2:16 pm Post count: 93172]

#1149512

I would like to hear from anyone who has had radiation on their
eyes. I was diagnosed with Graves disease in 1988. Had RAI in
1989. Was doing sort of okay until 3 months ago. Started having
eye problems. I had been on a steroid for a month, but when I
stopped all the problems came back with a vengence. Now I have
eye movement restriction and double vision. I will see the
radiologist in about a week.

[Anonymous June 29, 1998 at 2:30 pm Post count: 93172]

#1149513

Hi Machell, welcome to the BB. I have had the orbital irradiation treatments. My eyes started bothering me about a year after RAI. I had a CAT scan before I had the radiation treatments. I also had the steroids by intravenous which did not work for me. The radiation treatments did slow down then stop the disease and I had decompression surgery about eight months later. I feel it is most important that you have a radiologist that works along with your Ophthalmologist. You should be aware of what they are aiming for and what surgeries might be necessary in the future. If you go under author on the previous page and bring up my postings you will find I have done many postings on the procedure I went through. If you want to talk further please e-mail me by clicking on my name in red.

Good luck and I will put you in my prayers that things will go smoothly. SAS

[Anonymous June 29, 1998 at 2:52 pm Post count: 93172]

#1149514

I also had the eye radiation treatments done. And it did suppress the eye
disease. I had it done last year and now will be getting my first surgury
in August for the doublevision. It was a long haul. I would recommend that
anyone who has the aggressive type of this eye disease do go for it.
Unfortunately what ever damage was done usually will have to be dealt with
surgically. At least it does stop it from getting any worse.

Good luck and you will be fine!

Gia

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